No new news. Evy slept in 'til 10:30 am today. She thinks she is a teenager. Now she is wide awake at 9:40 pm in a darkened room sitting in her high chair by request. Our nurse is singing her a monkey song. Yes, this is how we roll.
I have this great image of Queen Evy in her "highness" chair and a jester etertaining her... That little girl can hold some court! I'm sure if Evy could have outside visitors, she would have people wanting to dance and sing for her at all hours - her very own American Idol. Then, she'd sleep until noon, sip some juice, eat whoopie pies and bon bons while watching it all from her high chair. : )
HAPPY BIRTHDAY EVY AND STELLA! Two years old...unbelievable! I still remember your call saying "I'm pregnant...and it's TWINS!" Hope today is a great day for all, and especially for the birthday girls! Smooches, Erry ps-it's damn cold and I haven't been to the post office, but I will get there and gifts will be on their way!
Hi, we are Jill and Brian, mama and dada to beautiful twin girls, Stella and Evelyn. Evy was diagnosed with a rare type of highly aggressive brain cancer called AT/RT in November of 2009 at the age of 22 months. She has completed her treatment, which consisted of 17 rounds of chemo over 53 weeks and concurrent proton beam radiation for six of those weeks. She is currently disease free. We now rely on MRIs every three months to make sure it has not returned. Evy rhymes with Chevy.
For other AT/RT parents / brain tumor nerds: Evy had one mango-sized tumor located in the supratentorial region of the brain. She had a full resection. There was no metastisis to the spine. Evy completed the IRS III protocol (version 38) with 28 rounds of proton therapy radiation. She does not have the INI1 deletion. Evy had a stroke because of her tumor and is still making strides to recover from it. She can walk, but cannot yet use her right hand. So far, Evy's negative side effects from chemo and radiation have been: cardiomyopathy, permanent baldness on her radiation site, and drastic loss of natural growth hormone.
To read about Evy's ng tube feedings during treatment, click here.
I have this great image of Queen Evy in her "highness" chair and a jester etertaining her... That little girl can hold some court! I'm sure if Evy could have outside visitors, she would have people wanting to dance and sing for her at all hours - her very own American Idol. Then, she'd sleep until noon, sip some juice, eat whoopie pies and bon bons while watching it all from her high chair. : )
ReplyDeleteLilli
Oh, and happy birthday Stella & Evy!
ReplyDeleteLove, Auntie Lilli
HAPPY BIRTHDAY EVY AND STELLA!!! (yes, I'm yelling. I'm waaaayyyyy up in NY. Wanted to be sure you guys heard it!!)
ReplyDeleteOh, I hope she repeated the 10:30AM wake up. That sounds good to me just about now. I could be streching in my bed. Hmmmm.
ReplyDeleteHappy, happy Stella and Evy! Shared birthdays are the best, even if you can't be together. Hope it's a good one.
xoxoxox from your buds Belle and Izzy
HAPPY BIRTHDAY EVY AND STELLA! Two years old...unbelievable! I still remember your call saying "I'm pregnant...and it's TWINS!" Hope today is a great day for all, and especially for the birthday girls!
ReplyDeleteSmooches,
Erry
ps-it's damn cold and I haven't been to the post office, but I will get there and gifts will be on their way!
Happy birthday to your beautiful darling girls! I hope today was a good day for all of you, even if you could not be together.
ReplyDeleteHappy second birthday! I hope Evy and Stella enjoyed their special day. Much love, me
ReplyDelete